Tuesday, August 16, 2011

Photo of the Day: Reality

Every five hours, four times a day, I take two of these pills. Eight pills a day, fifty-six pills a week, two thousand, nine-hundred, twenty pills a year.

This is what it is going to take for me to be "normal" again. I've been taking these since early June and I have seen a difference. I've gained back the weight I lost when I hit my first flare and then some. I've stopped suffering pains that make me want to stay in bed all day long. I've regained lost energy and managed to improve my moods on an almost daily basis. These pills make me ordinary again, but they also mark me as a freak. They tell my co-workers and the people who see me take them that I've lost the genetic lottery. Again.

In general, I don't rant or rave too much about the fact that my body is a bit on the defective side of things, but I had a bit of a scare Saturday that sent me home from work after only three hours on the clock. After nearly twenty hours of sleep, a case of Powerade and a handful of CVS' version of Tylenol, I felt better. Gritty, sweaty and sore, but better.

And that's all I can really hope for these days. "Better". Not well.

I'll never really be completely well again and the risk of eating the wrong thing will only get higher as I get older and the condition degenerates. No matter how many times I remind myself "it could be worse", a niggling part of me nudges that bit and says "yeah, but it could be better".

The one big scare about all of this is that I'll be moving away in about a month. I'll be headed to another country, another world practically, and I'm not sure if I'll be able to get my medicine there. It makes me wonder if I'll revert to where I was, slowly wasting out of my own skin and shedding pounds with each passing day. I don't want to go back to that. I don't want to live with burning, pinching and cramping on a daily basis.

I want my blue pills. I want to keep my grip on reality.

And even if I can't get well, I want to keep getting better every time I fall ill.


Miss Lumpy

This is really powerful. I'd like to say something like "In your struggle for wellness, it's important to stay positive and thankful," but, not knowing the situation, I know I have no right to. Just take it one day at a time- that's the only real way to keep the fear of getting worse at bay, in my opinion. Remember to express your fears and feelings like this and through your art, and remember that there are people around you who want to help. I don't know much about your particular illness (it sounds familiar, from the symptoms you've described, to things my friends have struggled with), but if you ever need to talk, I'm here. ♥

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